Mares Posted November 1, 2021 Share Posted November 1, 2021 Hello, My name is Mary. I am new around these parts. My husband of 3 years was diagnosed with stage 4 lung cancer on July 8th, 2021. As my journey into caregiving as started I’m seeking information on how to support, help, and provide the best care I can for my husband. Maybe in part always seeking help myself to deal with all the craziness this brings to one’s life. Our life will never be the same (as with any other chronic illness or cancer). Cancer took our dreams of having a family, a sense of normalcy, feelings of security, and many other things. But what cancer can’t take is our strength, fighting spirit, hope, and most of all our faith in God.Thank you for reading. Link to comment Share on other sites More sharing options...
LUNGevityKristin Posted November 1, 2021 Share Posted November 1, 2021 Hi Mares! Happy to see you here! Link to comment Share on other sites More sharing options...
Mares Posted November 1, 2021 Author Share Posted November 1, 2021 Now where do I go Kristin? I’m still a bit lost navigating the site. Thanks! Mares Link to comment Share on other sites More sharing options...
LouT Posted November 1, 2021 Share Posted November 1, 2021 Hello Mary, Welcome to our forum. It seems that a you already brought a strong and fighting spirit with you for this battle and that will help you more than you know. This is a lot of information you will find here, but the more you can tell us about your husband the more we can share our experiences in answering questions you may have about this new journey you are on. In the meantime, please check out our Caregivers Resource Center. If can be found here. In the meantime, please share what you care to about your husband's situation and ask any questions you may have. I'm editing my post to add some reading for your husband as well. It's a blog written by one of our longest survivors; Tom Galli and it's titled "10 Steps to Surviving Lung Cancer; by a Survivor" and it can be found on this link. Lou Link to comment Share on other sites More sharing options...
Tom Galli Posted November 2, 2021 Share Posted November 2, 2021 Mary, Welcome. In addition to the resources Lou shared, Lungevity has a Thursday, November 18th: Caregiver Connection Zoom Program, 7 pm CT / 8 pm ET. Find details by navigating to this address: www.lungevity.org/virtualmeetups This zoom program allows you to meet and discuss the unique challenges of caregiving for a lung cancer patient. I do hope you join this session to share your experience with others. Stay the course. Tom Link to comment Share on other sites More sharing options...
Steff Posted November 3, 2021 Share Posted November 3, 2021 Hi Mary, welcome! Thank you for taking care of your husband. And thank you for looking for ways to care for yourself. Being a caregiver is not an easy task. If you have the opportunity to take part in the caregiver Zoom meetings with other caregivers, it would probably be worthwhile. While I have not personally taken part, I have heard great things. I've been involved with several LUNGevity programs and they have all been great. While your life may never be the same, that doesn't mean that your life has to be unhappy. While I was very stressed throughout my mom's cancer diagnoses and treatments, our lives were not unhappy. In fact, we worked hard to bring joy to every situation we were in, even if she was sick in the hospital. The nurses loved us because we tried to make fun whatever we were doing. I am hoping you and your husband can get to that point as well. Lung cancer does not have to be the focus of everything in your lives. While it will be at the forefront of your thoughts and plans for awhile, most people here have been able to move on from the constant panic and LIVE their lives. I often think what's the point of going thru treatment if we are not going to live our lives? It took me longer to get there than it took my mom, but we both got there. You can too. Feed your fighting spirits so you can LIVE your life. I have 2 thoughts for you: 1) Sometimes the most helpful thing we can do is to ask our person what they need rather than try to fix every little thing or read their mind. You may be surprised what your husband's response will be. Earlier this year, I asked my mom what she needed me to do. She told me that she needed me to go on a camping trip with my husband. Knowing I was camping and having fun brought her so much joy, which ended up being the best medicine for her during her final days of life (she did NOT die of lung cancer). So, I am a big advocate of asking what a person needs in that moment and more long term. 2) Do what you need to do. I despise when people tell caregivers to take care of themselves. While I understand their concern, as a caregiver, I say do what you need to do. I have ZERO regrets about how I cared for my mom. I think that is one thing that helps me get thru the day now that she is gone. So, if you are a person that burns both ends of the candle or someone who cares for themselves when they need it, do what you need to do! I hope some of this helps a bit, Steff Link to comment Share on other sites More sharing options...
Mares Posted November 6, 2021 Author Share Posted November 6, 2021 On 11/1/2021 at 9:57 AM, LUNGevityKristin said: Hi Mares! Happy to see you here! Thank you! I’m glad I joined. Link to comment Share on other sites More sharing options...
Mares Posted November 6, 2021 Author Share Posted November 6, 2021 On 11/2/2021 at 12:17 PM, Tom Galli said: Mary, Welcome. In addition to the resources Lou shared, Lungevity has a Thursday, November 18th: Caregiver Connection Zoom Program, 7 pm CT / 8 pm ET. Find details by navigating to this address: www.lungevity.org/virtualmeetups This zoom program allows you to meet and discuss the unique challenges of caregiving for a lung cancer patient. I do hope you join this session to share your experience with others. Stay the course. Tom Yes! I went to the last one and Kristin sent me here. Great minds think alike! I plan on attending that meeting also. Link to comment Share on other sites More sharing options...
Mares Posted November 11, 2021 Author Share Posted November 11, 2021 On 11/3/2021 at 3:47 PM, Steff said: Hi Mary, welcome! Thank you for taking care of your husband. And thank you for looking for ways to care for yourself. Being a caregiver is not an easy task. If you have the opportunity to take part in the caregiver Zoom meetings with other caregivers, it would probably be worthwhile. While I have not personally taken part, I have heard great things. I've been involved with several LUNGevity programs and they have all been great. While your life may never be the same, that doesn't mean that your life has to be unhappy. While I was very stressed throughout my mom's cancer diagnoses and treatments, our lives were not unhappy. In fact, we worked hard to bring joy to every situation we were in, even if she was sick in the hospital. The nurses loved us because we tried to make fun whatever we were doing. I am hoping you and your husband can get to that point as well. Lung cancer does not have to be the focus of everything in your lives. While it will be at the forefront of your thoughts and plans for awhile, most people here have been able to move on from the constant panic and LIVE their lives. I often think what's the point of going thru treatment if we are not going to live our lives? It took me longer to get there than it took my mom, but we both got there. You can too. Feed your fighting spirits so you can LIVE your life. I have 2 thoughts for you: 1) Sometimes the most helpful thing we can do is to ask our person what they need rather than try to fix every little thing or read their mind. You may be surprised what your husband's response will be. Earlier this year, I asked my mom what she needed me to do. She told me that she needed me to go on a camping trip with my husband. Knowing I was camping and having fun brought her so much joy, which ended up being the best medicine for her during her final days of life (she did NOT die of lung cancer). So, I am a big advocate of asking what a person needs in that moment and more long term. 2) Do what you need to do. I despise when people tell caregivers to take care of themselves. While I understand their concern, as a caregiver, I say do what you need to do. I have ZERO regrets about how I cared for my mom. I think that is one thing that helps me get thru the day now that she is gone. So, if you are a person that burns both ends of the candle or someone who cares for themselves when they need it, do what you need to do! I hope some of this helps a bit, Steff Hello Steff, It’s a huge help. LC doesn’t defines us. We’ve been trying to keep our minds in the here and now. The problem is COVID Delta variant. I have two jobs putting me in direct contact with all form of illness. I follow the CDC and my school districts recommendations. Our oncologist assures us since both of us are fully vaccinated and have a booster shot the percentage of him contracting it is very minimal and if he did get sick he’d probably have a mild case. Sadly, it’s on the forefront of our minds. We are trying to make memories by going for fall leaf peeking, listening audio books of Agatha Christie novels, watching sports together (I love Nate very much but I draw the line at watching golf. Watching golf makes watching paint dry look like an extreme sport. Just saying), mini golfing (summer), and a variety of other things. We are trying to live in the present and keep hope that everyday will be amazing. We are hoping to go to some holiday family events if we can do it safely. I also am trying to let him live his life normally. He had a camping trip recently. He enjoyed it. I enjoyed some time to myself. That made us happy. As far as self care goes I understand the frustration. Everyone is recommending how to take care of myself. Prayer. Meditation. Exercise. Reading. Taking up a hobby. Journaling. Therapy (I do see a therapist). Joining all these groups. The list goes on. I’m extremely grateful for how everyone is helping. But the problem is I am so overwhelmed with the constant flow of information. Reading peoples stories, getting advice from everyone, learning medical terms (which I’m convinced is a torture unto its self with all these crazy names and acronyms). I feel learning is important but only taken in small chunks. If I do do something for self care I am not very helpful to my loved ones. I do need something outside of sleeping. But again I can see your point. Thank you for response! ~Mares Link to comment Share on other sites More sharing options...
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